Public participation is increasingly an aspect of policy development in many areas, and the governance of biomedical research is no exception. There are good reasons for this: biomedical research relies on public funding; it relies on biological samples and information from large numbers of patients and healthy individuals; and the outcomes of biomedical research are dramatically and irrevocably changing our society. There is thus arguably a democratic imperative for including public values in strategic decisions about the governance of biomedical research. (...) However, it is not immediately clear how this might best be achieved. While different approaches have been proposed and trialled, we focus here on the use of public deliberation as a mechanism to develop input for policy on biomedical research. We begin by explaining the rationale for conducting public deliberation in biomedical research. We focus, in particular, on the ELS (ethical, legal, social) aspects of human tissue biobanking. The last few years have seen the development of methods for conducting public deliberation on these issues in several jurisdictions, for the purpose of incorporating lay public voices in biobanking policy. We explain the theoretical foundation underlying the notion of deliberation, and outline the main lessons and capacities that have been developed in the area of conducting public deliberation on biobanks. We next provide an analysis of the theoretical and practical challenges that we feel still need to be addressed for the use of public deliberation to guide ethical norms and governance of biomedical research. We examine the issues of: (i) linking the outcomes of deliberation to tangible action; (ii) the mandate under which a deliberation is conducted; (iii) the relative weight that should be accorded to a public deliberative forum vs other relevant voices; (iv) evaluating the quality of deliberation; and (5) the problem of scalability of minipublics. (shrink)

Reviews the book, Relational being: Beyond self and community by Kenneth J. Gergen . In this book, Gergen develops and elaborates a theoretical framework for shifting the unit of analysis in psychology and other social sciences away from the individual toward relationships. The core arguments of the book revolve around claims that individuals are social constructs that should be understood not as natural and self-evident phenomena but rather as emergent from relationships. By corollary, many of the properties traditionally associated with (...) individuals are argued to be better understood as relational accomplishments; that is, as arising from the larger context of the social fabric from which individuals are seen to be emergent. Significantly, Gergen also asserts that traditional individualist assumptions have negative impacts on our social world. He focuses on a number of specific domains to illustrate how a relational approach would lead to a more constructive, harmonious, and better existence. I found much value in the practical aspects of Gergen’s exposition of relational being, while feeling uncomfortable with the epistemological and ontological foundations provided in the book. The root of this ambiguity seems to lie in Gergen’s own contradictory stance, which oscillates between offering a relational approach as “just another perspective” and implying the moral and epistemic superiority of relational over individualist approaches. Although the former position seems to me sensible and appropriate, the latter constitutes an unnecessary universalism that seems to run counter to the pluralistic spirit that is evident in parts of the book. Gergen’s own words, "Let us replace the Hobbesian dystopia of 'all against all,' with a vision of 'all with all'" for me sums up both the strengths and weaknesses of the book—the insights offered by the application of a relational perspective to specific practical contexts are a truly valuable contribution; but suggesting that this perspective is a panacea and needs to replace all individualistic accounts is counterproductive. 2012 APA, all rights reserved). (shrink)